Baby Marley gets help

Observer Mogul in the Making awardee uses crowdfunding to assist boy with rare skin condition

IT took only eight days for a Gofundme account set up by Sasha Palmer, founder and CEO of fruit popsicle company Liqy Liqy, to raise the money Baby Marley needs to get a medical test abroad.

That test will let Marley’s parents know what type of epidermolysis bullosa (EB) the 18-month-old is afflicted with.

The test will help to inform the treatment they get for the baby whose story, published in the Sunday Observer on August 23, 2015, melted readers’ hearts, generating 593 Facebook shares and 33 online comments.

Palmer was among the readers posting comments. But long before she clicked on the post icon, she had sent off an e-mail with an offer to Marley’s mom, Shauna-Gay Mitchell, at approximately 3:00 am after reading the story online.

The offer was to set up a crowdfunding account in order to raise the approximately US$1,600 Mitchell had told the Sunday Observer was needed for the test.

Epidermolysis bullosa is a very rare condition that causes the skin to be fragile. It affects one in 50,000 newborns and causes the formation of painful blisters, which can result in serious problems if they become infected.

To protect their skin from peeling, EB patients wear bandages.

Those bandages are costly, but Mitchell had told the Sunday Observer that, in an effort to keep the costs down, she has devised a system of washing and reusing the bandages.

While the illness, which has no cure, usually shows up in babies or at the early stages of a child’s life, some cases are known to have developed during adolescence or early adulthood.

Most cases of EB are hereditary. However, Mitchell said that as far as she is aware there’s no history of the illness in her family.

“When I saw Marley’s story it touched me. To see a baby in so much pain, bandages…” Palmer told the Sunday Observer.

Mitchell, who has two other children, admitted that she was awakened by Palmer’s

e-mail, but she really didn’t believe that a response to the story would have come that quickly. So, she returned to bed.

“By 6:00 am I was getting excited, and I said ‘okay, what’s going on? I need to respond to this e-mail’, but because we were going to the country, and I had to get everybody ready to leave by 7:00 [am] I wanted to sit and respond. I didn’t want to rush it,” Mitchell explained from her Kingston 5 home on the day Palmer visited and presented her with $296,000 — the money donated by 16 people, mostly in Canada, who read Marley’s story as it trended on the Gofundme top 10.

For those 16 donors, giving to a fund set up by Palmer was not an issue, because she had already earned a reputation for using crowdfunding to help people in need.

Among them are cancer patient Beverly Sobah; the family of Shakera Facey, the 19-year-old who had a huge tumour on her shoulder; and 14-year-old Leslie-Ann Gouldbourne, who has a brain tumour.

Palmer came to their aid after reading their stories in the Sunday Observer earlier this year.

“Over time, they have seen what I have done with the money they donated, so there is trust,” Palmer explained.

Palmer said that when she first approached Mitchell and Marley’s dad, Omarie Case, about using crowdfunding the couple was hesitant.

But Mitchell, who has a background in film-making, explained that her hesitation had its genesis in the fact that she had planned to do a documentary on Marley and, therefore, “didn’t want people to say, ‘oh, every time I see that name Baby Marley she begging money.”

Also, there was the matter of her pride.

“I didn’t realise how much pride I had until now, but I was happy that what I got from Sasha was that this was not about me, it was about Marley,” Mitchell told the Sunday Observer.

Palmer said that, while Mitchell and Case “didn’t come out seeking help”, she saw and felt their pain.

“You can’t blame them, but with the Gofundme, it’s just people who want to help,” Palmer said.

“Crowdfunding is a platform that we should not be afraid to use. I’ve seen the effects and the rewards,” said Palmer, who received the Business Journalists Choice award in this year’s Jamaica Observer Mogul in the Making, which promotes young entrepreneurs.

She explained that even though the person for whom the account is opened can see the donations as they come in, they cannot see who the donors are.

“A lot of people don’t contribute for publicity,” Palmer pointed out.

Mitchell revealed that when she saw the donations coming in, she was astounded. In fact, she cried on seeing a donation of just over US$1,000 from a group called Christ Followers.

“After I had finished crying and dried my tears, I went over to hubby and showed him,” she said.

“The people who donated, they have no idea what it means to me,” Mitchell said. “I knew what crowdfunding could do. I didn’t doubt that the money would be raised, but I didn’t think that it would happen so fast, and the denominations blew my mind.”

Now that they have the funds, the couple is making arrangements to take Marley to Cincinnati Children’s Hospital, which has an epidermolysis bullosa centre described by the hospital as one of a few in the United States that provides comprehensive care for the unusual condition.

Meanwhile, other Jamaicans have contacted the couple with offers of help, mostly in the form of bandages for Marley.